The purpose of this book is twofold: first, to describe the history of epilepsy in its modern era, from 1860–2020; second, to explore the reasons for the directions that epilepsy has taken. Epilepsy is much more than a simple medical illness. It has attained a symbolism (an ‘idea’) which has become deeply embedded in the culture of mankind. There have been powerful medical, scientific, societal and personal currents shaping its course, and this book attempts to take a broad perspective on its history, incorporating all four elements. The influence of science is one often overlooked by historians, and yet has played a crucial role. The hegemony of capitalism in the long twentieth century, and the influence of society and culture have equally been often ignored in scientific and medical treatises, and yet have been fundamental in the setting of the epilepsy agenda. The personal story is told through personal testimony and the creative arts which can provide deep insights into attitudes and concerns. Robert Burton’s Anatomy of Melancholy is taken as a model for the approach taken. The complexities and inherent biases of the book are also described.

In this period, the science and medicine of epilepsy continued to expand rapidly, and a selection of the leading theories and practices are described. There were significant scientific advances in relation to mechanisms of epileptogenesis and epilepsy-induced cerebral damage, including work on ion channels, neurotransmitters, cerebral networks and systems. There were major advances in the basic and clinical genetics of epilepsy. Other clinical developments occurred in fields including the epidemiology of epilepsy, status epilepticus, rare causes of epilepsy, the use of big data, and in drug and surgical treatment of epilepsy. Epilepsy research had become a worldwide phenomenon, and the medical literature on epilepsy expanded greatly. In the social sphere, too, epilepsy was changing. The Global Campaign Against Epilepsy raised the profile of the condition at governmental level internationally, and this was a period when political lobbying for epilepsy increased and when the voice of people with epilepsy could be strongly heard on social media and also, for the first time, in numerous memoirs and autobiographies by authors with epilepsy. Epilepsy now featured frequently in books and films, with a new realism and more sympathetic tone than in the past.

The basic science of epilepsy made fundamental advances in this period, with the discovery of GABA as the chief inhibitory transmitter and glutamate as the chief excitatory transmitter involved in epilepsy. This spurred intensive research by the pharmaceutical companies and the introduction of a range of new drug treatments, although none were shown to be of superior efficacy to those already existing. Extraordinary progress was made also in the basic science of genetics, although this did not feed into clinical epilepsy. The major investigational advances were CT and then MRI scanning, which transformed clinical practice in epilepsy, and also EEG technologies allowing prolonged monitoring and video-EEG correlation. The number of clinical researchers in epilepsy greatly increased, stimulated by changing university and hospital priorities and the technological advances of the computing era. Advances were made in many clinical fields in epilepsy, including epidemiology, paediatrics, epilepsy syndromes, febrile convulsions and their relationship to temporal lobe epilepsy, SUDEP and status epilepticus. Aided by therapeutic drug monitoring, antiseizure drug monotherapy became commonplace. New drugs and new surgical techniques were introduced. An attempt was made to federate ILAE and IBE under the umbrella of a new organisation, Epilepsy International, but this failed.

The modern era of epilepsy can be said to date from around 1860. In the ensuing decades epilepsy was at the centre of an enormous range of endeavours which included Hughlings Jackson’s landmark works, the theory of cerebral localisation, the introduction of bromide and then phenobarbitone therapy and the first attempts at the surgical resection of the epileptic focus. It was the period when idiopathic epilepsy (‘genuine epilepsy’) was considered to be an inherited degenerative brain disorder, associated with mental symptoms and deficiency and a specific ‘epileptic personality’. It was the period when neurology first became a recognisable medical specialty, special hospitals for epilepsy opened and epilepsy colonies were formed all over the world. Lombroso considered epilepsy and criminality to have close connections. Inpatient treatment was conducted within the asylum system by psychiatrists. Epilepsy was associated with enormous stigma and was widely hidden or denied. In 1911, eugenics was proposed as a solution to the problems caused by epilepsy. Dostoyevsky, Zola, Dickens, Hardy and others included epilepsy in their books, and leading authors suffered from epilepsy but concealed their condition. International medical and psychiatric congresses were held, and during one of these, the International League Against Epilepsy was formed.

The understanding of epilepsy in 2020 is compared to that in 1860. During the intervening years, many theories and practices were introduced, widely adopted and then fell from favour. Despite this, remarkable progress has been made. This chapter takes stock not only of the substantial body of knowledge that has endured, but also of the mistakes made, and blind alleys entered, in the past. The advances made in science and medicine, and the changes in societal attitudes, are put into their historical context. The second purpose of this chapter is to consider where, in the author’s opinion, contemporary epilepsy seems now to be taking wrong turnings and which current concepts are likely to wither like others in the past. Here the spotlight turns also onto the ‘dark side’ of epilepsy, where ideas are not only wrong but detrimental and false. In recent years, terminology has changed and in Eastern cultures the word for epilepsy has changed its form. The question is also debated as to whether reform should be more far-reaching and the term ‘epilepsy’ dropped altogether.

At the beginning of this period, psychiatry and psychology still dominated the management of epilepsy. Psychometry was widely used in epilepsy colonies, laws were passed restricting the rights of those with mental handicap, and psychoanalytical theories of seizures, conceived as symptoms of infantile regression, and also of the epileptic personality were widely held. Diverse theories of heritability were postulated. The rise of eugenics, as well as of psychoanalytical theories, greatly worsened the stigma of epilepsy. Eugenic measures were introduced which included involuntary sterilisation in some countries, and ‘mercy killings’ by the Nazi regime. In the later years, the science of epilepsy advanced with studies of neurochemistry, neuropathology and neurophysiology, and in the late 1930s EEG burst into the clinical arena. Treatment also made progress with the introduction of the ketogenic diet and then Phenytoin. The two world wars resulted in new interest in the surgical treatment of post-traumatic seizures. Attitudes to epilepsy remained largely hostile and the condition featured in the works of well-known authors including Thomas Mann, Agatha Christie, Joseph Roth and John Cowper Powis, who had epilepsy but never revealed this publicly. The ILAE ceased to function in 1914 but was resuscitated in 1937.

The concept of epilepsy, its meaning and its signification, transcend any simple medical definitions, and have changed remarkably over the course of the twentieth century. This is not to say that the physical manifestations have changed – they have not; but the idea of epilepsy has radically altered. Epilepsy in 2020 would be completely unrecognisable to any citizen, doctor or patient of 1860, 1900, or indeed later. Four points are especially relevant to the changing concept: whether epilepsy is perceived as a disease or a symptom; whether epilepsy is explicable as a functional mental disorder or an organic neurological disorder; whether epilepsy has other inherent features apart from seizure; and whether epilepsy is an inherited disorder. The pendulum on these points has swung violently during the course of this history. Finally, there is the question of whether epilepsy should be considered to still exist. Although it clearly is an outmoded concept from the medical and scientific perspective, in many societal and personal settings it has utility as a shorthand describing the liability of a person to have epileptic seizures. It is a term though that comes also with the baggage of history, prejudice and much unhappiness.

The pace of basic and clinical science increased dramatically in this period, boosted by an enormous increase in funding, especially in the USA. The pharmaceutical industry developed strongly and a range of new drugs were introduced for epilepsy, including ethosuximide, carbamazepine, valproate and the benzodiazepines. Pharmacokinetic principles were introduced into clinical prescribing. Specialism in medicine developed strongly and neurology took over from psychiatry as the primary specialty of epilepsy. Temporal lobe epilepsy was identified as an important form of epilepsy, the relevance of hippocampal sclerosis was recognised and temporal lobectomy was introduced. The ILAE became an important force in epilepsy with the introduction of its classification of seizure types. The ‘welfare state’ provided access to modern medical care for all patients with epilepsy for the first time in history. Institutionalisation greatly diminished. The stigma of epilepsy began to lessen in the era of liberalism and social democratic principles; social attitudes towards epilepsy greatly improved, as did the position of those handicapped by epilepsy with the disability rights movement. The patients’ voice was beginning to be heard, legislation was adopted protecting the rights of people with epilepsy, epilepsy featured in film/TV and new patient associations were formed including the IBE.